A while ago, Neurodivergent Rebel posed an intriguing question: "Autistic and neurodivergent people who are late discovered: do you wish you could have found out sooner?" This is a topic I often address in my talks about Autism. I frequently encounter adults who express their reluctance to label their child, stating, "Oh, we don't believe in labels or diagnoses."
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During my childhood, I constantly received messages that conveyed my inherent wrongness. These messages came from my family, teachers, peers, and virtually everyone around me. I was told that my thoughts were wrong, my actions were wrong, and even my way of speaking was wrong. Despite having the academic capability, I struggled significantly in school. I possessed an early aptitude for reading and was solving algebra problems in elementary school. However, society did not start recognizing people like me, who are Autistic, until long after I had graduated high school. Consequently, I was burdened with labels such as "disruptive," "defiant," "not applying myself," and "weird." The prevailing narrative of my childhood was overwhelmingly negative.
During my teenage years, the narrative shifted from being wrong to being bad. Consequently, my parents sent me away from home on seven separate occasions, with three of those instances involving religious residential behavior modification programs. We now recognize these programs as part of the deeply problematic Troubled Teen Industry. I wasn't a bad kid, but at that time, no one understood the struggles and challenges I faced, leading to me being labeled as "bad."
These facilities were more than just problematic for me; they were outright torturous. The staff lacked any understanding of behavior science, child and adolescent development, trauma-informed care, or neurodiversity. To them, everything was viewed as manipulation and control, even a simple request to use the bathroom. The extent of the abuse I endured and witnessed is beyond the scope of this article. Even now, I am still in the process of healing and processing these experiences. Others have articulated their stories more effectively than I can at present, but it's crucial to acknowledge the horrific child abuse that occurred within these facilities. And they occurred because of the labels I had been given.
What no one comprehended at the time was that I wasn't intentionally causing trouble; I was simply struggling. I wasn't giving people a hard time; I was having a hard time. But I lacked the knowledge and ability to effectively communicate my difficulties or advocate for myself. I didn't possess the vocabulary or language to describe executive dysfunction, sensory processing challenges, overload, shutdown, anxiety, depression, or the myriad of emotions I experienced while living in an overwhelming and bewildering world. I vividly remember being in elementary school, on the playground, with my back against a gray stone wall and my hands shielding my eyes from the bright sunlight that gave me headaches. I remember not having language to comprehend why I was struggling as all the other kids ran around and played. To this day, I wear sunglasses, even on cloudy days in Seattle (which is most days). Summer in Seattle is undoubtedly the best day of the year.
It wasn't until I turned 33 years old that I discovered I am Autistic. During those 33 years, I battled severe depression, crippling anxiety, and passive suicidal ideation for much of my life. I spent all those years feeling fundamentally broken, assuming that everyone else experienced the same world as I did and that I was a failure for not coping as well. This sentiment applied to school, interactions with peers, and my experiences in the workplace.
There are countless other stories I could share, but circling back to the initial point, when individuals claim they don't believe in labels, what I perceive is that many more young people will endure similar traumatic experiences as I did. Even without labels, without the knowledge of being Autistic, I still felt different, wrong, weird, and bad. Middle school for me was plagued by bullying, rejection, and ostracization from peer groups. Institutional abuse and adult frustration with my inability to "just comply" were additional sources of distress. As a result, I internalized these negative messages, incorporating them into my identity and my core beliefs about myself. "I am a bad person." "I am unworthy of love, friendship, kindness, or grace."
This deeply ingrained feeling I came to know well is called shame. Guilt says, "I did something wrong," while shame insists, "I am something wrong." For much of my life, I lived with the deep-rooted belief that there was something inherently wrong with me. But shame is always and unequivocally a lying liar who lies.
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Parents may harbor concerns about labels such as "Autistic" or "ADHD" for their child, fearing that these labels imply a deficit and hinder their potential. However, it's important to recognize that labels themselves don't determine a child's future; it's society's response that poses challenges. The problem lies in the lack of support and understanding within social structures, educational systems, and workplaces for neurodivergent individuals.
The prevailing notion is that if we mold a child to resemble their neurotypical peers, they will have the best chance at success and a fulfilling life. However, this line of thinking is fundamentally flawed. It defines the "best life" by neurotypical standards and denies the child their authentic self, hindering their opportunity to thrive and depriving them of self-acceptance, necessary tools, and confidence. Blaming the child for being different is misguided; it's the world that requires our attention, resources, and efforts.
Instead of shying away from labels, we should focus on creating inclusive environments that celebrate diversity and provide appropriate resources and accommodations for every child's unique needs. By reframing the conversation around labels and fostering a culture of acceptance and support, we can ensure that every child, regardless of their neurodivergence, has the opportunity to thrive and lead a fulfilling life.
It is crucial to seek out information, connect with support networks, and advocate for children's rights and needs. Together, we can challenge misconceptions, create a world where neurodivergent individuals are valued for their strengths, talents, and contributions, and celebrate the full potential of every child, including their labels. Let's work towards a society that embraces equal opportunities for all. Children's identities depend on it.
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In summary, I wholeheartedly believe that it is crucial for children to understand who they are, to possess the language to describe their challenges, strengths, talents, and intelligences, and to receive the tools and support necessary to thrive in their own way. And it all begins with having the appropriate language. Just imagine if a child could say, "I am feeling overwhelmed," "I am struggling with this task," or "the lights and sounds are too much for me." They can only do so if they possess understanding and language and labels, the foundation for self-advocacy.
As a final illustration, it is worth noting that individuals who claim to reject labels still use them all the time. When we visit a hardware store, which itself is a descriptive label of a type of store, we don't simply ask for a tool; we specify the type of tool we need, like a hammer. Moreover, we differentiate between various hammers—a sledgehammer for driving fence posts or a ballpeen hammer for finishing nails. People who eschew labels like Autistic, neurodivergent, or disabled, and subsequently deny their child the fullness, knowledge, and language of their own experiences, often do so because they perceive these labels as inherently negative. However, like any tool, labels can be used for good or bad depending on how they are employed.
To return to the initial question, I absolutely wish I had known about my Autism (and likely ADHD) when I was younger. The redemptive aspect of my story is that I have the opportunity to champion for kids like me and to be the person I needed during my own youth. I yearn deeply for a world where no one has to endure what I went through, and that begins with acceptance, understanding, knowledge, and yes, labels.